Ken sent something to MOL, and I think it's very timely for me because it brings up something that has been bothering me for a long time.
Suppose that you have established contact with a sixteen-year-old young woman with a significant disability - SVI or CP or arthrogryposis or spina bifida or.... Complete this list:
[My items were:
I wish for you...
- that you can know that you can live independently with your disability
- that you can know that you can do a job with your disability
- that you can know that you are still valuable and appreciated even if you do not earn money because you cannot find a job due to discrimination
- . that you can know that you are not a child just because you have a disability
- that you can know that people want to be your friend
I had written something to the group earlier:
No word back on that job possibility. I'm not at all surprised, but not being surprised doesn't make it hurt any less. I am having a very hard time thinking of myself as a good role model when I have no job. When organizations I've worked with in the past have put together lists of potential mentors, one of their top criteria has always been that the people are working with the exceptions of housewives. I don't consider myself a housewife--I have no family to care for. So I am having a very difficult time defining what makes me a good role model. I am not successful. It frightens me to have kids look up to me. I will disappoint them. When they learn that I really don't earn any money, they will stop looking up to me and fear being like me when they are my age. Why not? I would have if I had met someone like me. I would have thought that the person like me was a fraud, acting successful when she really was nothing but a grown person who had no reason to be living at home when she was perfectly capable of holding a job. My therapist said this morning that maybe I should work on accepting things the way they are. I don't want to. My parents' opinion is that my situation is all the result of choices I've made. So accepting it means that I have to admit that it's my fault and that I really just don't want to work and I haven't tried hard enough, or else I would be successful like I've always expected I could be. I didn't *WANT* this to be what life was like right now. But after seven years of searching, yes I am tired and yes I am selective about where I send my resumes. In my opinion it's pointless to apply for something I know I'm not qualified for or won't be considered for. But in some people's eyes (sometimes including my parents') that means I'm just not trying hard enough. So I can't accept the situation as being something I can't change. I have to accept it as a personal flaw; and that's something I can't do.
I perceive an inconsistency in my life. Maybe it's not as much of an inconsistency as I perceive it to be. Maybe the problem is my perspective. But I feel like I am living a lie.
When I was a little girl, much emphasis was placed on the fact that I was going to go to college and get a job one day. Yes, it was a fact. There was never a question, and it was something I treated as a fact. I can even still hear my first teacher of the visually impaired saying enthusiastically when I would get tired, "You've got to work hard because you're going to go to college!"
I never met any blind adults until I was a teenager, and at that point all but two of the ones I met were employed. The two in question were a housewife and a student who was in her 30s and still living at home with her parents. My friends and I felt that L was very sheltered, and none of us wanted to be like her when we were in our 30s: struggling with school and trailing around at Mama's heels.
I remember being very impressionable with some of the other adults as well as with some sighted adults. It sort of embarrasses me now. I was extremely lonely; and the adults acknowledged things I was good at, hugged me when I showed up, etc. I wanted more of those hugs, and I wanted to be around those people as much as I could. Even now that I'm in my 30s, I still wish those adults would come around and give me a hug and compliment me or take me to lunch just because. One of them still calls me Trouble when I see him at American Council of the Blind conventions. It makes me feel like a kid but not in a bad way. It makes me feel like the kid who was appreciated as a kid with potential.
I went to college, just as the teachers said I would. Oh, I got to choose my own major--that wasn't planned out for me. I must have really enjoyed having that kind of freedom to choose my own course: I did it some five or six different times--and almost finished each program! People sometimes try to console me by telling me that lots of people take ten years to finish their degrees. I don't know whether I should point out that this is generally because they are going half time and working, not because they are taking 15 and 18 hour semesters and going to summer school! There were a few semesters when I withdrew; but most I finished. My final transcript has nearly 200 credit hours on it. That's not really something I am proud of.
So here I am now, not working. I've done a lot of things in my life, but I'm not working. Most people online probably don't know that. People offline think I'm 15 or 16 years old because I look young and I run around attending the same church my parents attend, riding in with them, etc. People online see me participating on disability-related groups, and I've been assumed to be anything from a teacher to a counselor to a parent and even once or twice a doctor. I don't have a problem explaining that I'm not a doctor--my site makes very clear that I am a person with disabilities, and never anywhere do I use any title or initials after my name. The teacher one is hard because I completed most of the coursework and then dropped out of the program, and I feel a lot of shame about that. Where has my teaching knowledge come from? From working part-time as a child care provider, from teaching a handful of people daily living skills when they lived with me during their first experience living away from home, from tutoring a couple of students who were homeschooled, from writing help topics for JAWS during my time working as a contractor for Freedom Scientific, and from years spent reading emails from parents and teachers about what works and what doesn't, making notes in my head and saving the emails away because I'm a writer and that's what writers do... I'm not a licensed counselor; but where does my counseling experience come from? From ten years of moderating email-based support groups and sitting up at night with people who were suicidal or recovering from emotional trauma, from living with disabilities and from spending 16 years acting in various ways as a peer counselor and mentor for other people with disabilities and their families.
When people ask me what my job is, I usually tell them that I am a freelance writer. But the truth is that I have not been paid for a piece of writing since 2003. If I went into business writing, I could earn a lot of money. But I don't want to go into business writing. I don't think I would be good at it because I have absolutely no desire to learn about it and no clue how to break into that area. In my mind it is a saturated field. What I would love to do is write patient education materials and press releases for doctors; but again I have no idea how to enter the market. All my previous experience is in other areas. So am I a writer or not? The same holds true for most other things I advertise that I do. I haven't gotten paid for much of anything during the past two years. Everyone wants me to volunteer, but no one wants to pay me. Am I happy being unemployed? And if that's the case, am I a bad role model because I'm not chomping at the bit to get off SSI?
I haven't even talked about my fear of being here until I'm 80 or 90 and having no family of my own and relying on my sister's family to take care of me. That's something I can't really put in words right now--it hurts too much. It's the one reason I want to be able to support myself without relying on SSI; but I feel powerless most of the time to change my life--mostly because I don't have the energy or support to establish my writing business firmly or set up any other ways to bring in small incomes that could add up. Partially due to my health difficulties and partially due to my own fear and emotional difficulties, I can't stick with anything long enough to succeed; and the one thing that was succeeding for me was taken from me just as I began to trust it.